Over the years since Mom was diagnosed with Lewy Body Dementia I have often wondered what she thought in the early days when she realized something was going on. She never really talked about it with me or my siblings and I think she talked only a little more about it with Dad. She was a very independent person who protected her family. I believe she didn’t want us to worry about her and that is why she hid it for so long.
Today I had the opportunity to visit and read a blog that is greatly appreciated. Diary of a Psychiatrist Physician with Lewy Body Dementia and Alzheimers is the blog of David Thomas, MD. Dr. Thomas is a 59 year old physician who has been diagnosed with Lewy. He has begun this blog in an attempt to share this disease from a first-hand patient prospective. He writes about his medical training that involved only the briefest mention of Lewy Body Dementia and how the diagnosis has affected him. My heart goes out to Dr. David and his wife, Pamela as they deal daily with the tragedy that is dementia. Even so, I am extremely grateful for their willingness to be open and honest.
Dr. Thomas mirrored my thoughts about blogging in that it sometimes feels self centered to write about myself and things that matter to me. Yet, his blog is not selfish, it is selfless. I wonder if I were in his shoes would I be able to write freely about what was happening. I commend him in his desire to further knowledge and offer insight and support for other Lewy sufferers.
The beginning entries of his blog detail the incidents that led to diagnosis and he has begun to share some of his deepest feelings. He describes the pain of deciding to surrender his medical license and how that affected him. His persona was largely built around his work as a physician. He put many years into his education and more years in his practice of helping others. Now, that part of him is past, although he, by writing his blog, is sharing his knowledge of the disease from a unique doctor-as-patient view point.
My mother was not a physician, but she worked many years outside the home. She volunteered and devoted herself to others. As the disease progressed she was unable to return to any kind of work outside the home. Eventually she was unable to drive. Then, slowly, she lost the ability to do the basics of everyday life for herself.
I wonder sometimes what her thoughts were when she was more aware and for periods of time understood what was happening to her. She never really talked about it. It saddens me that she felt she couldn’t share more with us, but that was the way Mom worked….she protected us and dealt with whatever life threw at her.
Reading Dr. David’s blog was hard. I want to know more about Lewy, but it devastates me as I read about others who are dealing with the disease. Dr. David is doing a noble thing by sharing. I encourage you to visit his blog. It is brand new and has had only a few entries, but already has increased awareness. He has a blog counter on the site and since he began the blog early this month it has already had over 500 hits. I regret that Lewy has given him a reason to blog, but in doing so he has put a face on the disease. That is what we need in order to fight Lewy; we need the disease to have a face and not be just some blurb in a medical text book somewhere.